Bug bite IBC?

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Low_energy
Low_energy Member Posts: 9
edited March 2020 in Not Diagnosed But Worried

Hello,

Was having severe breast pain 4 months ago. Doctor said it was normal and reluctantly ordered an ultrasound of the left breast lymph system. Came back negative. Wrote the whole thing off as nothing, but was back at a (new) GP a month later to address some growing fatigue. This doctor was very concerned about brain cancer (past medical issues), but my insurance ran out before I could get the head scan she ordered. Three months later, new insurance is about to kick in and I have to decide what to check out first. This new insurance is very expensive so have to choose wisely as I can't afford to get it all looked at. Going to skip GP and go straight to a specialist... but which one? Still experiencing massive breast pain in left breast and for the past two months, this spot has taken up residence. Has grown a bit bigger in fact. The top has a scaly feeling, but overall resembles more of a pink/purple bug bite. I'm also experiencing worsened fatigue, can barely climb stairs (32 years old) nausea (not pregnant) two month long low grade fever/sweaty/chills, bone pain (not muscle.. feels like a toothache in my legs/arms), pain and bleeding after sex for the first time in my life and significant weight loss. This has all seemed to come out of nowhere. I look and feel horrible. Any opinions whether to head straight to an oncologist or maybe a dermatologist? If oncologist, how fast do they normally fit in appointments? Thanks in advance.

Family History- Father has colon/pancreatic cancer

Grandmother: skin cancer

Great-grandmother: passed away from IBC

*Had a picture of spot included, but platform is not allowing the upload

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2020

    I think you need to start back with your GP.

    Most women, even with advanced breast cancer, have few, if any symptoms. Certainly not the long list of systemic things you seem to have going on. It would be even more expensive to jump from specialist to specialist without knowing what kind you need. In a few months I think IBC would no longer look like a scaly bug bite. It tends to progressive very rapidly, in days, if not hours

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  • djmammo
    djmammo Member Posts: 2,939
    edited February 2020

    Low_energy

    "This doctor was very concerned about brain cancer (past medical issues)"

    If your doctor feels your symptoms and/or physical findings suggest a brain tumor, I would get the Head scan first. A growing brain tumor will kill you quicker than a growing breast cancer.

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  • nowaldron
    nowaldron Member Posts: 94
    edited February 2020

    Hi,

    Not sure where you live, but have you considered just going to an ER? When I was diagnosed with Stage IV de novo, my back pain was so severe that I could barely walk. I couldn't even sit in the car which is why my husband called an ambulance. I was immediately admitted. Granted, it was expensive (thankfully I have good insurance), but I was very, very ill - mets to skull, spine,ribs,sacrum, femur and liver. I did have a bit of an inverted nipple, but it didn't seem serious, at the time. You shouldn't suffer if you are experiencing all of the horrible symptoms you mentioned. Why wait for an appointment? It is a sin and a shame that we need to consider finances before our health.

    Good luck and please don't wait any longer than you have to for medical assessment.

    Nancy

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    While you have some breast symptoms, nothing else you mention sounds like breast cancer. It seems more likely that you have something systemic going on, an infection or an autoimmune condition or something like that.

    I agree with MelissaDallas that you should see the GP first to get an assessment of all your various symptoms so that he/she can recommend the right specialist to see, and hopefully get in you in quickly. Focusing on your breast might cause you to miss the bigger picture and could delay your diagnosis.

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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Djmammo, thanks for your insight. I agree the brain cancer avenue should be explored, but have put that on hold for a minute as I just got promising results- well more like a clue- that everything is okay there. About two weeks ago a very kind ophthalmologist gifted me an impromptu optic nerve exam while visiting his office with my young daughter. A swelled optic nerve was how they found the 5 inch cyst my brain 14 years ago and everything looked fine with the optic nerves last week. To be honest, my head isn’t nearly as painful as my breast and bones. The bones are a dull and sometime shooting pain and the breast pain seems to be radiating from the lymph nodes which re now hard pea sized things in my breast and groin area.


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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Beesie, thanks for your reply. Autoimmune was the second guess from the GP, but stressed she strongly suspected something more “serious”

    MelissaDallas- Thanks for your quick reply. I *may* go back back to the GP, but she was the one to actually encourage me to nix primary care for the time being and go straight to a specialists. She point blank told me that primary care physicians cannot order the tests I need (even though she eventually got an mri approved)

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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Hi Nowaldron,

    Thanks so much for your concern and for sharing your story. I hope you’re doing well.

    I have thought about going to the ER several times this past month. Especially this past week when I started getting shooting abdominal pains and swelling... eating even less than my two year old at this point. Both from pain and the fact I feel “full” after a few bites. Also increasing shortness of breath. My torso feels oddly full, so much so that I did a pregnancy test!

    To be honest I am at a bit of a loss of what to do/ who to see. My GP seemed to made it clear she didn’t think PCP was the way to go. I asked her repeatedly and she stressed that I see someone else ASAP. She gave me a list of three specialists and said that they could help me more than she. One was a neurologist, one an autoimmune and the last a foot surgeon (unrelated) She said out of the three seeing the neurologist as top priority. Of course we lost insurance the week after, and this new insurance has a massive deductible. we just enrolled Friday evening with my husbands new job and I don’t think it kicks in until the end of next week or even the following week. So if I go to the ER now it will be uninsured. Having trouble speaking even while lying down.. chest won’t inhale all the way it feels. My oldest just came in to show me her drawings and even now I can’t respond well.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2020

    Low_energy, if at all possible, we agree with the others that you need to get in to a doctor, even ER to understand what you are explaining, regardless of insurance - if possible. We really hope you get this taken care of and can feel better.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    Is appears you know your GP fairly well? Sounds like you're writing off neurology problems. In most cases, you just can't waltz into see an oncologist. So what's left is autoimmune. And I like the dermatology suggestions. I would call the GP & task with determining your next move.

    And also ask her where you'll get the most bang for your buck.

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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Hello, thanks all for replying. Bit of an update. Just got in from urgent care ($300, drs visit,cbc panel, electrolytes etc, chest and full left leg xray)

    Breast lymphs are screaming after all the prodding. Overall a VERY attentive doctor. She was awesome. There was no one available to read the leg and chest xray. Doctor said it looked good to her, but it's not her field. The urgent care outsources radiology overseas. Dr explained the overseas radiologists read all xrays overnight (time zone) and will get back to me tomorrow if bad news. I have read the outsource radiologists have a HUGE workload.. as in 1000 x rays a day or something crazy, so hopefully they do a thorough job, but not as likely if they have that type of reading material. The radiology tech seemed concerned about the leg xray and kept coming back to a few spots. I got a copy of the scans for future drs, but unsure if they will even take previous scans at other places? This is all so new to me. Also, for anyone wondering the bones don't have a "raggedy" lesion look, but some have semi to very distinct borders on parts. For instance some parts of the bone will be darker and then a slight border with whiter bone on the other side. Not sure what that means.

    Blood results were unremarkable... except for low lymphocytes and high monocytes. Ugh. Even without insurance, I want to keep an eye on that.. if need be will use Quest direct to order cbcs.

    So where this leaves me...this doctor was so sweet and recommended a pulmonologist/ full torso, leg CT. Says the CT scan will show almost everything we need to know.. breast cancer, bone, lung etc. Wants me to see a specialist asap, but said to nix the GP even without me voicing my opinion. She said I can send results to the GP's office, but GPs wont be able to really help. This dr took the whole thing very seriously and agreed a speedy time line is best. A bit discouraged since the insurance could take anywhere from 14-30.. to now 60 days.





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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    I'm glad that you saw a helpful, responsive doctor and have recommendations on what to do. At this point I agree that there is no need to see the GP - the only reason I'd recommended seeing the GP first was because a doctor would be better able (than you, or any of us here writing to you) to determine which specialist you should see first. You'd been considering an oncologist or dermatologist, but now you have the Urgent Care doctor's recommendation that you see a pulmonologist, which is a doctor you weren't even considering. And you have a doctor's recommendation that you get a CT scan.

    Where do you live?

    And did the doctor recommend a pulmonologist? Would you be able to get in more quickly if the appointment is set up by a doctor, rather than calling yourself? And if you can't get in quickly, could your GP (here I am, back to the GP again) schedule you for a CT scan? It's not a question of whether the GP can answer any of your questions or make the diagnosis (clearly she can't), but whether the GP can help you get into the right doctors and get your tests more quickly. Where I live (Canada), that is very much the role of the GP. It may not be true within the medical system where you live, but it's often the case that doctor's offices and testing facilities tend to respond more quickly to urgent requests from other doctors, versus patients calling themselves.

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  • djmammo
    djmammo Member Posts: 2,939
    edited February 2020

    A word about off site / after hours radiology interpretation

    With the advent of digital imaging and teleradiology, images can be read from anywhere in the world with very quick read times. Many hospitals use their services and although they are contracted and paid for by the radiology group, the hospital has to sign off on the qulaity and reputation of the service being used. They usually cover from 11pm to 7am so that the hosp rads can get a good night's sleep and be fresh for the next day's work. ER docs are trained to identify the immediate life threatening / significant findings on the studies they order but less so the subtle findings plus only a radiologist can issue the final report.

    The concept is to send the overnight images to a radiology group (not just one rad) in a time zone 12 hours different so they are reading them during their regular working hours so they are awake and alert when reading them. The ER studies are read immediately, and likely come up in the same queue as the ER studies they are reading for their own hospital. A report is generated and sent back to the ER that ordered the study.

    The next day the local radiologists review the images and the report that came back with it. They then issue either a new report or an addendum stating whether they agree with the findings in the report, or listing any additional significant findings they picked up in which case the report would be called directly to their ER. The quality of the reads from the overnight service is tracked and if not up to par, the contract is terminated and a replacement service is sought.

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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Hi Beesie,

    Thanks so much for your insight. I appreciate it and your advice echos what my Grandma said last night- pcp's have always scheduled her appointments and the PCPs call holds more weight than a patient's would. Right now I am waiting for a call back from a semi local cancer center. They listened to the story (with many breaks to catch my breath) and said I called the right place and they can usually get patients seen quickly. If that falls through I will call the PCP and ask her to do some scheduling. I'm not sure if she offers this as I have only gotten referrals via names written on dr slips.

    Symptoms are much worse today. Short of breath. Dizzy. Bone Pane. Trouble thinking clearly. Breast pain... breast is now getting pink all over.

    Thanks again


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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Hi Djmammo,

    Thanks for your reply. This was not an ER- urgent care. This urgent care chain does not employ any flesh and blood radiologists in the US. I asked. So the result gets read once by a very rushed, overseas radiologists it sounds like.


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  • djmammo
    djmammo Member Posts: 2,939
    edited February 2020

    Low_energy

    Still curious why you think they are "very rushed" ?


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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Djmammo- The radiology tech with my breast ultrasound said the radiologist was rushed... and she/he was just a few doors down taking screens as they came presumably. I can only imagine what it would be like for a "teleradiologist" with images from hundreds of locations pouring in. I don't know about this field, but most companies of any type usually try to get by with the minimum of staff needed to maximize profits. So that could likely put a high workload/rushed. I see the positives of outsourcing for hospital staff in an after hours ER setting, but in urgent care.. who knows what level of expertise is at the other end of the company they hired. Are they mainly looking for fractures since it's urgent care or are they able to spot any bone malignancies, which I'm told (from dr last night) can be quite subtle. I don't know. I feel too out of it to discuss really.

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  • Maryjv
    Maryjv Member Posts: 306
    edited February 2020

    Low energy, thinking of you and hoping you get some much needed answers🙏❤️The unknown is Very stressful!

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  • Elderberry
    Elderberry Member Posts: 993
    edited February 2020

    low_energy: I think of you often. No word from you since a few days ago. It must be terrible for you to be in the position that you are in and no one should have to be there. I am worried for you.

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  • Low_energy
    Low_energy Member Posts: 9
    edited February 2020

    Hi Elderberry,

    Thank you so much for your kind words. I truly appreciate it.

    Since posting I have had a myriad of appointments... including a mammogram and ultrasound both of which were negative. However the mammogram was so incredibly dense that the radiologist recommended an mri. Found an awesome ObGyn who is taking this very seriously. After a thorough breast exam, he said the breast in question is noticeably swollen and “thicker” with color differences.He noted the nipple changes and completely understands why I am concerned, which is very encouraging. He mentioned sending me to a breast specialist, but in the meantime wants to get further imaging. So in about 12 days will be a much anticipated breast MRI- little worried since the order says “mastalgia” with no mention of swelling.. hopefully the radiologist knows to look for IBC if needed.

    Thanks again for reaching out! Will try to keep this updated.

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  • Anton0277
    Anton0277 Member Posts: 10
    edited February 2020

    Dermatologists can often do a bunch biopsy to diagnose IBC that is missed on mammogram and ultrasound. My understanding is that it is a quick, safe test. Try to find a competent dermatologist who understands your concerns. This can sometimes be challenging but I think definitely worth the effort with IBC issues

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  • Elderberry
    Elderberry Member Posts: 993
    edited March 2020

    low_energy: Have you had your MRI? Mastalgia essentially means "breast pain" - the radiologist will be checking for everything/anything. Keep us posted. Wishing you the best

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